Our youngest sons, Simeon (Eon) and Bogdan (Bo), have Down syndrome or Trisomy 21. This is their story.

Monday, May 19, 2014

My Wonderful, Unfunny Vacation

If you're a Facebook friend of mine, you know that we went on vacation last week. We traveled a bazillion hours in our old, and decidedly uncomfortable, fifteen-passenger van from Indiana to Holden Beach, North Carolina.

Eon, impatiently waiting for his turn to load in.

In a rare moment of genius early last fall, I rented us a house on the beach, rightly thinking the ocean may be the one vacation idea that would appeal to the broad range of ages and abilities we have in this family. There's nothing quite like thinking/hoping/praying that you got it right in the months/days/hours leading up to it, but still having that nagging little snitch of doubt in the back of your mind until that glorious moment you walk through the door of the home and the view literally causes you to take a step back and you know, with complete assurance, you did good!

View from our deck

The kids had a marvelous time which has only gotten better with the re-telling as memories often do. We learned tides and undertows, hunted shells, created castles of sand, and met new creatures. We played games and watched movies, and did lots and lots of laundry, just like home. This will be remembered as one of the best family vacations we've had.

But behind all the funny Facebook posts and the happy pictures was another story. I tend to color my world with humor, not because I try to "spin" it, but simply because that's how I choose to see it. I'm blessed enough to be married to someone who can usually see the funny, even when it eludes me. Together, we choose to laugh when chaos abounds, which is much of the time in our house. But sometimes, laughter doesn't come until later. Sometimes, circumstances are just hard. Vacation with Bo was hard. All of his behaviors were magnified in this strange place away from home. He threw things. All the time. I don't know that we've really child-proofed our own house, necessarily. It's more like he's already broken everything breakable and we can relax knowing that all the damage has already been done. So in the vacation home, we put up everything breakable that was noticeably within reach, but he also climbs and kept finding more things to throw. He knocked pictures off of walls, threw the remote controls, chucked the Jenga pieces at the big screen TV, cleared water bottles off of end tables, etc. (Oh, crud. That reminds me. I don't think I rehung the pictures I stowed in the boys' room closet. Bummer.)We were constantly on edge. We also forgot his booster seat to keep him contained during meals which means if we took our eyes off of him for one second, he was on the table throwing dishes or trying to get at the hanging light fixture. Even contained, he throws food...pre or post-chewed. Nothing like getting chucked in the head by a glob of chewed up corn dog. We have a rotating seating chart so we can share the "fun" of sitting directly in his path. Bo loved the ocean...which was right outside our back patio. Thankfully, the backdoor latch had a trick that only the older kids could figure out, but still, with that many people coming and going it was a constant refrain of, "Is the back door locked?" and a small surge of adrenaline while waiting for an affirmative answer. As he can climb out of the pack-n-play, I became OCD in my need to wake and check the door locks multiple times per night and dreamed every night that we lost him to the waves.

Because he could see it through the windows, he cried most of the time he wasn't actually in the water. And by crying, I mean pinching, hitting, and kicking us at the same time to express his displeasure. When that failed to yield the desired result, he would simply wail and hit himself. Distraction was futile. In the water, he would sit and let the waves wash up to his belly. If a wave looked like it was coming in too fast, he stood up to greet it showing that he was able to learn a healthy respect for this giant bathtub which baffles me as we seem to be incapable of teaching him the simplest of things. He splashed and threw sand and had a great time until he grew bored and tried to run away, repeatedly. He is a very fast little boy. We are very tired parents. The details are softening, even now, a few days home. I've no doubt if I didn't write this post, we'd minimize it in our minds. But I don't want to forget. Sometimes, I think it's good to acknowledge that life with special needs is harder than without. I need to recognize that there is a reason that I'm tired. I need you to know that if I seem defensive or edgy, I could use some extra grace. Because while I laugh and enjoy and love this life, sometimes it's hard.

We will laugh about it all again. In fact, we stopped at Cracker Barrel on the way home. Predictably, it was a disaster. Bo got ahold of the peg board and threw it, scattering pegs across the restaurant. Little people changed their orders a thousand times. Middle people kept leaving the table for potty breaks. Bo fed himself really well until we let our guard down and then chucked food which was horrifying. My oldest and I spent more time on the floor picking up after him than we did eating and gulped our food down at the last second. Finally, the big kids took everyone to the van so we could pay (we're big tippers, by the way. I always try to minimize the awful impression we leave by a big tip) and I looked at Shawn and smirked, "You just brought us here so we'd be so traumatized we wouldn't want to stop the rest of the way home.""Bingo!" he laughed. Sometimes we laugh because of the special needs in this family, and sometimes, it's in spite of them. But always, even in the hard and the unfunny, we are grateful that we get to do this together. I wouldn't trade any of these people.